IT Media Lab’s MedRec is a blockchain-based healthcare data management solution
Their central focus is on the Electronic Medical Record (EMR). MedRec aims to give patients access to, and control over, their EMR while facilitating and motivating medical research.
The patient interface
MedRec provides a user-friendly interface for patients to access their EMR. The interface includes notifications of any updates to the EMR. MedRec also enables users to decide “when, and with whom, they share their data.” Patients will have the power to use the MedRec interface to grant a guardian, family member, new doctor or any other participant the rights to view their data. Furthermore, patients may share information regarding a specific subset of their EMR (such as data relating to a specific health condition) while keeping the rest of their EMR private. MedRec gives patients a high level of granular control over their data, and can even isolate individual fields for independent sharing or restricting.
MedRec as a “Database Gatekeeper”
MedRec does not store any actual medical records on their blockchain network. Rather, MedRec stores “aggregate data pointers” that only reference the medical records, which remain in their existing databases. These “pointers,” or references to the actual medical data, are at the heart of MedRec’s approach and are aggregated into patient-provider relationship units. As viewership permissions for the actual medical data change, these pointers and relationships get updated, allowing or restricting access to the medical data accordingly. The entire process operates through their “Database Gatekeeper layer.” MedRec maintains that its blockchain model, centered around their “Database Gatekeeper layer,” alleviates many common concerns that would otherwise arise without it. Perhaps most importantly, it allows providers to keep their existing databases and continue to use them as they do now. This not only makes participation in the MedRec network all the easier and affordable for providers, but may facilitate HIPAA compliance.
Motivating medical research
The MedRec team maintains that the medical research that is essential for helping researchers and providers find new cures and treatments is greatly hampered by the present lack of access to sufficient medical data. Although some clinical trial and other data does “trickle through,” there is a pressing need for more data that is currently inaccessible.
MedRec hopes to provide a solution to this problem by introducing a “data economy.” In return for providing the “computational resources” that support the MedRec blockchain network, medical researchers and other participants will receive “census level, anonymized metadata” that is useful, presumably, for their research. Of course, patients and providers (“the data producers”) will have a say in how much of this metadata they release to the researchers and other participants (“the data consumers.”)
The future of a blockchain EMR
MedRec plans to perform ongoing usability and feasibility testing of their system with both patients and providers. This process will involve partnering with local healthcare providers to test the efficiency of their prototype. Once ready, they intend to release their framework as open source software. However, they are firmly committed to the principle that to use the system is not to own the data.
Unlike most, if not all, of the other nascent blockchain healthcare projects, MedRec is not a company. Nonetheless, their ambitions are similar to a host of startup companies in this emerging space. In terms of their prospects for success, their affiliation with MIT certainly plays in their favor both in terms of instilling trust in participants and in terms of providing access to the university’s technical and human resources. Furthermore, their model’s Database Gatekeeper layer has a number of advantages, noted above, that might make them especially attractive to providers with cost, integration and regulatory concerns. It is perhaps more difficult to predict how providers and patients will respond to their model’s “data economy” approach, although it does appear to provide a genuine incentive to medical researchers.